Tammy

You are not alone with feeling like you have your own version of POTS. It affects us all so differently. I can relate to feeling like I'm dying if I get too warm or too cold, or try to lift anything even remotely heavy. I rarely read posts about people having profound weakness spells as I get, so sometimes I wonder if I have the right diagnosis also, but than I'll read other posts that are exactly what I go through and dont' feel so alone with all this. Take care,

Tammy

Not only is the standing most difficult when shopping, the lights in many stores make me feel disorientated also, so I do all my shopping, even grocery shopping on-line, it's the only way I can be focused enough to buy the right things. The last time my husband took me in shopping to Target, I was there for about 10 minutes trying to decide on a hair color, as I wanted to color my hair for Christmas (even though I and since I stood there too long trying to decide, I suddenly felt soooo sick and weak .... so grabbed the color I was looking at right at that moment and tore to the check-outs as fast as possible before I almost collapsed. A few days later when I was feeling somewhat up to having my neice color my hair, she used to color I had picked up and I ended up with Flaming Red hair... it was than that I realized I obviously picked out the wrong color... (I have dark brown hair and I like nutmeg/chocolate colors)! So I learned I'm better off waiting for items to come in the mail

- Tammy

Wow, your BP is really high... that's a little scary! Hope it levels out soon...

Take care,

Tammy

This may be a little off the beaten path as for an answer to your qestion, but here's a look at IEP/504 Plans and how it works. Before getting sick, I worked in our district's special education department coordinating IEP/504 Plans, so have a pretty good knowledge of the process involved. I can't say which accomodations/modifications your friends child will specifically need, but parently input is a huge part of which services or adaptations to the child's education plan should be made in order to help the child be successful and ultimately comes down to parent signature / agreement for implementation of the plan. Bringing documentation and information to the meeting about POTS is helpful to create a better understanding of what accomodations may be helpful. All team members involved in writing the IEP or 504 plan are there to help the child succeed. If an agreement is unable to be reached, contacting the Director of the Special Education Department can be resourceful in certain situations but rarely does this happen.

Yup, I have this at times too, when I'm upright for too long or if I get under more stress than usual or just a lot of excitement can do it for me. AND virus' also do the same thing. When I've described what you call "drop attack" to my brother in law, that has fainted at times, he said that is exactly how he feels right before he faints (it's like our body gets in a prefaint like state for days instead), however, he feels well at all other times, so he's not sick like I am.... Are you a "fainter" or one of us that doesn't faint but feels like death most of the time? I hope you are feeling better soon

- Tammy

Okay, I think there is something wrong with me here.... I get sicker from coffee, dark chocolate, any type of stimulant... like very shaky and even more weaker than what I already feel. Am I missing something here....

- Tammy

I'm also on Atenolol and it definitely has increased my fatigue which I didn't think was possible but helps with all the tachy stuff most of the time. I still need to consume a ton of salt to keep my body upright for more than 5 minutes so it might help some symptoms and not others for you. Wish you positive results

- Tammy

As the many strange symptoms this illness causes, the one I don't understand is facial pressure. It is almost like sinus pressure from a cold, but different. I get lightheaded at the same time. Today, the facial pressure is really annoying. Even though it is one of the less severe symptoms I have, for some reason I'm just plagued with it today and for the past week. I'm more lightheaded than normal too, so maybe the two go together somehow. Anyone else have this?

- Tammy

Just came back from my doctor's appt and he would like me to start on either Provigil or Klonopin and I don't have a clue which one to try. I've tried Xanax and it doesn't help me with the wired.. tired feeling, hard to describe, but basically it's a very yucky sensation. I also have difficulty with making sense with words, and also word recall, but my mind isn't really foggy, just am to weak to put sentences together at times. Other times, I get short of breath and so weak just from trying to carry on a conversation... sensory overload is also a problem for me, along with light / sound sensativity. So with all that said, my doctor gave me the above drugs to choose from to try and I just don't know what I think of either. I need something that would both calm down my system but yet not leave me more weak than what I already am. Thanks for any input / ideas on this

- Tammy

Weakness, chills, short-of-breath.... oh, my!

Peeing and Peeeing and feeling like gum on the bottom of a shoe... what's a girl to do!

- Tammy

I experience this also at times, more so when my body is completely exhausted from too long of a day, too much stress, virus', and so many other things that cause my sympathetic system to over-react. When I spoke with both my cardio and my endocrinologist, they both feel these are a type of panic attack that may be caused by dreams.... however, I never remember any dreams when these happen and when I wake up from a bad dream, I don't have this sort of a physical reaction, so don't think it's dreams that are doing it so much Needless to say, these "panic attack" are no fun in the least ! If you can tolerate a beta blocker in the evening, it could be helpful for these.... but for some of us, beta blocker give severe insomnia which can be a worser evil, so to speak

Hope you are getting some uninterrupted sleep soon

- Tammy

Well with the family gatherings approaching with the coming holidays, I know I will be required to carry on conversations with many people, however this is one of my big triggers for getting lightheaded, nausea, weakness, facial pressure, etc. Any ideas on how to be socialable without having to talk to much and not look like I'm being anti-social? Or what could help with this symptoms? I tend to listen rather than talk as much as possible, but when it's "small" talk with lots of people/family all at once, not sure how to get through this better. It will be the week after my cycle begins, so know I will be less functionable anyway Thanks for any ideas !

- Tammy

Yes, I think benzo's have a time and place for them and they do help me with the awful surges, but I have found that most of my doctors strongly oppose giving them out and it's like pulling teeth to get a refill for them even though I take it on a rare occasion and baby dose or less. I am interested to see Lyrica listed as helping someone as I've seen the commercials for it and have thought to myself that I wonder if that would help me for POTS. I'll be talking to my doctor next visit about it. Thanks.

- Tammy

Does anyone else sweat like they just finished a work out when they have been only standing up for a while? This is a constant thing for me, more so in the mornings when I get going /start my day. It just seems ridiculous to have to put on deoderant just to be upright !

Happy Wednesday

Tammy

Taking a vitamin that my body can actually absorb. Only one that works for me is from Melaleuca. Has large amounts of vitamin B's and seem to help a little bit at times. Avoiding stress whenever possible. Stress is not good for us, but sometimes it's unavoidable.

Yup, I get this too. I usually get the pressure feeling and then lightheaded immediately afterwards.

Happy Happy Birthday,

From all of us to you,

We wish it was our birthday,

So we could party too - HEY !!!!!!

Hope you have a wonderful birthday surrounded by all those you love

- Tammy

Hi! Well I've recently had a blood cortisol level check, just a random test and it shows 19 in a range that 20 is the top of the normal, so that all looks good. Then they did a urine total catecholamine test, which I believe is also in relation to the adrenal glands, and it shows all normal, but on the low normal: Norepinephrine: 16 (range is 15 to 80); Epinephrine: 1.2 (range 0.0 to 20.0); and Dopamine (low) 44 (range 65 to 400). Since the blood test shows me in the high range of normal and the urine tests shows to be in the low range of normal, I'm really confused. My EP said these are normal numbers and wasn't concerned, so I guess I'm not concerned, but just confused as to how this all works. Anyone who can explain this would be helpful in my understanding of the nature of these two tests and why they don't correspond to each other. Thanks

I had purchased a walgreen's automatic bp monitor and it constantly errored out on me. So I got an Omron and it still errors at times when my pulse is very weak, but otherwise it works well.

- Tammy

I'm so thankful that I chose to have Jesus in my life. He is all I have to help me through my sufferings of this life and am also thankful to have Heaven to look forward to once this suffering is over.

- Tammy

Oh how I miss the remote car starter in our previous cars. They were the best. I wasn't sick at the time, but it was so nice to have a warm car to get into. We had them in our old buick park avenue and the F-350 truck. However, now we have a mini van and it didn't come with it as part of the package when we bought it and it doesn't have heated seats either like the other two vehicles did, so we ended up getting the heated car seat cushion and also a heated av blanket, so as soon as we get in the van when it's cold out, I plug in both the seat cushion and the heated blanket and it does heat up fairly quickly, so for those of you who can't afford the remote car starter, for about 19.00 you can get a heated seat cushion and a blanket for about 25.00 (us). Hopefully we can all stay warm somehow this winter when we are out and about

- Tammy

Transition lenses can help with this too. I now have transition lenses for my glasses and also the frame is the type that comes with the magnetic sunglass clip. It helps a lot but sometimes if the sun light sneaks around the frame into my eyes I still get the lightheaded/dizzy effect too.

- Tammy

Yup, going to agree here with some helpful advice of drinking water before hand and then immediately afterward going to the bathroom helps prevent them infections. Also cranberry juice is known to ward off UTI infections - so pull out the cranberry juice

- Tammy

Yes, you are not alone with this one. It's amazing that it only takes my body a few minutes to react negatively to any temp that isn't about 73 degrees! Anything hotter or cooler and I feel like patootie - and since we already feel like dungbettles, having to feel patootie on top of it just takes the cake

- Tammy

Hi JJH -

I wonder the same thing you do. My daughter is only two, however, but I do worry how in the world I am going to keep up with her. I have a terrible time diciplining her due to my extreme weakness and it definitely shows as she rules the roost, so to speak because I can't physical get up to deal with her when she's in trouble about 90% of the time and she ends up destroying the house and gets her way with everything because I can't handle when she screams - makes my ANS overload! I just keep praying that somehow she'll turn out okay, not sure what else I can do either. I get irritated when people tell me that I need to discipline her more.... they don't have a clue that I physically can't chase her down and get her to take a time out, etc. I'm really worried about Potty training as I can't squat/kneel and get back up as needed more than about once a day without major symptoms, so no idea how I'll be able to bend over to get her diaper off each time we need to try and go potty. This is definitely not the way I imagined being a mom would be

- Tammy